Across the world, every day nearly 6 million people live their lives with a form of Primary Immunodeficiency (PI). Currently, there are over 300 known PIs. The latest data released by AIP Onlus (Associazione Immunodeficienze Primitive) estimates these diseases affect one in every 1,200 individuals, approximately 70-90% of whom have yet to be diagnosed. To raise awareness among the public, educate and improve the understanding of this group of rare diseases, but also to facilitate diagnosis and treatment, every year the PI community celebrates World Primary Immunodeficiency Week (World PI Week, www.worldpiweek.org), which in 2018 falls between 22 and 29 April.
Kedrion Biopharma is proud to contribute towards achieving these objectives – not only by joining in this Week's celebrations, but also by partnering and supporting PI patient communities across the world on a daily basis.
To live up to this commitment, and celebrate World PI Week 2018, on 27 April Kedrion will take part in the AIP onlus organized conference “Vivere oggi con una Immunodeficienza Primitiva. 5 proposte per 5 bisogni ” (Living with a Primary Immunodeficiency Today. 5 Proposals to Meet 5 Needs) at the Anna Meyer Children's Hospital in Florence. The event, attended by patient associations, clinicians, companies, politicians and the media, will offer doctors and experts the opportunity to discuss PIs. Alessandro Segato, the Chairman of AIP Onlus, will open the conference by introducing the platform “AIProposte – 5 proposte per 5 bisogni” (5 proposals to meet 5 needs), which the Association has developed to help focus on the priorities, and make practical proposals, for the future of Primary Immunodeficiencies.
The Meyer Hospital’s Paediatric Immunology Center – which Kedrion has been supporting for several years now – is a member of the Jeffrey Modell network for the diagnosis, treatment and research of Primary Immunodeficiencies, which includes the world's leading Immunology Centers. The company is also a partner of the International Patient Organisation for Primary Immunodeficiencies: it supports IPOPI to raise awareness of PIs and to expand access to treatment for patients the world over. Among the latest projects developed together is the PID Genius App, which Kedrion supported from design to launch and, to date, is still promoting alongside IPOPI. PID Genius is a mobile application designed to simplify and improve the management of Primary Immunodeficiencies for those living with the disease.